Posts: 17

Topic: My husband has cc

Hi everyone, my husband was diagnosed with a klatskin's tumor in June. We were sent to Emory to be part if their liver transplant protocol. Everything was moving along as planned, and as they doing the final tests needed for listing him on the transplant an enlarged lymph node was questionable. He had an exploratory procedure done laparoscopically last week and the lymph node was positive. We have two young children (my husband's only 31) and was feeling positive and hopeful about the outcomes of the transplant. Our surgeon said he doesn't have any plans of surgery/resection with the positive lymph node. We are wanting a second opinion. Does anyone have recommendations for aggressive oncologists/surgeons? We will gladly travel anywhere. Thank you all!!

Re: My husband has cc

Send your scans/reports to Dr. Chapmen at Barnes-Jewish Hospital in St. Louis. Also you can search for him on this website and see what other people have to say about him. He seems to be a great Doctor for Liver transplants.

Sorry to hear about your husband and I wish him and your family the best.

Re: My husband has cc

Since you did not mention your husband's disease by stage or why he might be trying to qualify on the liver transplant list, my guest is he is stage IV.Mayo Clinic is the place that developed the liver transplant protocol for hilar cholangiocarcinoma liver transplant; and I believe MD Anderson in Houstonmay be willing to do liver transplant for intrahepatic CCA .So that may be the best places to start with.God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: My husband has cc

Dear Beardme, Welcome to the best little club in the world that no one wishes to join but know you have come to the right place. I am so sorry you got that ticket on our roller coaster. I know you will be getting some great advice on here so hang on and hang in. I can't suggest much for transplant as my husband had a Whipple surgery. Just wanted to welcome you and tell you to have hope we have a lot to give here! Please keep us updated on hubby's progress!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My husband has cc

Hi Beardme,

I'm sorry to hear about your husband's diagnosis. I too had a Klatskin tumor, and was first evaluated under the transplant protocol at UCLA. Because of lymph node involvement, I was also dropped from the protocol, which is not atypical. More surprising to us, they were unwilling to do a resection because of the lymph node, and elected to put me on palliative care. Before agreeing, we sought a second opinion at USC with Dr. Robert "Rick" Selby. He did two resections on me, including a lymphadenectomy.

So, if the lymph node involvement is the only reason they refuse to do a resection, I think you are exactly right - you need a second opinion from a more aggressive surgeon. I can only recommend two surgeons, one in Los Angeles (Selby) and one in Pittsburgh (Dr. Wallis Marsh, UPMC), with whom we had consultations and they agreed to surgery. Hopefully, others will chime in with recommendations closer to you.

Best wishes to you and your young family. You will be in our thoughts and prayers.

Re: My husband has cc

Hi-I am a CC survivor due to two liver transplants. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Everyone on the CC site knows I think he walks on water, and am very biased, but once again he just changed the diagnose of a women given no HOPE and he was able to do a resection on her!! (She since in the last few months has ran several 5k's). Dr. Chapman is one of the top docs and also the most kind caring, and humble doctor. He has changed at least 3 CC members diagnose.Jim-glad to see someone else putting Dr. Chapman's name out there!!Please let me know what if I can help.Lots of prayers and HOPE-Cathy

Re: My husband has cc

Hi-I am a CC survivor due to two liver transplants. I am alive because of God, 2 strangers and Dr. William Chapman at Barnes-Jewish Hospital in St. Louis MO. Everyone on the CC site knows I think he walks on water, and am very biased, but once again he just changed the diagnose of a women given no HOPE and he was able to do a resection on her!! (She since in the last few months has ran several 5k's). Dr. Chapman is one of the top docs and also the most kind caring, and humble doctor. He has changed at least 3 CC members diagnose.Jim-glad to see someone else putting Dr. Chapman's name out there!!Please let me know what if I can help.Lots of prayers and HOPE-Cathy

Re: My husband has cc

Hello there - Welcome aboard the roller coaster for CC. My husband was diagnosed in May with Klatskin's tumor with lymph node involvement - one that was very close to the tumor was positive. We had the resection on June 4th and while it was a 14 hour surgery I can say we are doing well now (there are some good days and bad days) and on chemo to hopefully kill any cells that may be left. We had our surgery at Virginia Mason in Seattle by Dr Flavio Rocha and are continuing our treatment with Dr Vincent Picozzi at Virginia Mason. I have to say that I love both of them. Dr Rocha did a Roun-en-Y with a liver resection with removed 7 lymph nodes total with only the one positive.I did not know much about CC before this (despite being a nurse) and did not join the website until after surgery but I would not change who we had do everything. Of course financially for us we could not have afforded to go anywhere else even if we wanted to so I am glad we got lucky.I am sure you will have more chime in on great places to go and those that would be willing to give it a try. Dr Rocha told us before surgery that he would only NOT do/finish the surgery if he found distant nodes positive or any other metastasis int other words significantly advanced disease.

Keep us posted and certainly ask any questions.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: My husband has cc

Kris....did you know: Dr. Rocha received a young investigator award from the Cholangiocarcinoma Foundation via ASCO (Conquer Cancer Foundation?) You can also view his video presentation on our site:http://www.cholangiocarcinoma.org/media.htmHugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My husband has cc

Beardme....I too would like to welcome you to our site. Already you have been given great advice. You might also want to peruse our Our Medical Advisory Committee listing:http://www.cholangiocarcinoma.org/medic … ouncil.htmPlease keep us posted. We are in this together - we care.Hugs,Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: My husband has cc

Marion -I did know. It was interesting to listen to. He is a really great guy with a great sense of humor which came in handy more than once. I did learn not to hug a surgeon right after a 14 hour surgery. There's a reason they keep the OR's so cold. What I liked about him really though was he never assumed that just because I was a nurse that I understood everything that was going on but after surgery when we got home, I called a lot and we were able to keep Mark out of the ER several times because he trusted me enough to have me do things for him that normally he wouldn't ask people to do. I have nothing but great things to say about him.

KrisV

Any advice given is based on my experiences and should not be substituted for any medical recommendations. Please speak with your provider before making any changes.

Re: My husband has cc

Hi welcome. Sorry to hear about your husband. My diagnosis is different and I do not have a klatsin tumor. However I am young, 34 and have 2 small children and definitely understand what you are going through. I don't have any advice as far as what you are looking for but a lot of people on this site do. Good luck on yalls journey. Definitly look into other opinions. I have not done that myself but will be in the future. Hang in there!

Re: My husband has cc

Thank you all so much for the warm welcome. I am so eager to learn more about Cholangiocarcinoma. I've been able to fax his records to two different facilities, and look forward to hearing back from them.

Re: My husband has cc

Hi There - I am in Atlanta too and my husband has CC. We are currently being treated at MD Anderson. My husband is in a trial. The trial is in pill form so we only have to travel there once per month. He was diagnosed in April. I would really recommend that you go see Dr Mark Johnson or Dr Sellers at Piedmont. They work together. We have seen Johnson twice and we love him. They are aggressive. They will not do surgery on my husband right now because he has tons of affected lymph nodes. BUT, it does not sound like that is the case with your husband. My husband, Travis, is 38 and we have 3 little kids. I am so sorry that you are going through this. It is awful. Contact me anytime. We are in Marietta. I will be happy to share what we have learned.

Re: My husband has cc

Hi there!I also go to MDA for treatment. After about a year of my cancer being under control from chemo, my doctor there sent me to Houston Methodist to see if I could get on the transplant list. I did and was transplanted about 4 months ago.I will say, my transplant doctor said he would not do surgery (of any kind) if there was mets outside the liver. So they are 100% sure that the nodes have cancer? I'm so sorry you are having to go through all this.

~Tiffany~ 31 years young Fighting CC since 10-27-2011Wife to Brian; Mommy to Carter (8) and Madison (4)http://tiffanyschwantes.wordpress.com/Liver transplant 7-9-2013

Re: My husband has cc

Tiff1496: he just had exploratory surgery and 1 lymph node and other tissues were removed and biopsied and the lymph node was positive, other tissues were not. It just stinks to go into treatment thinking that he was going to be transplanted and having our radiation team telling us that it would not spread since he was receiving treatment. Well it did. Now our surgeon and oncologist disagree in that the Oncologist says the last MRI shows it was stable and to continue Xeloda until it proves ineffective, but the surgeon says he wouldn't say it was stable. We are trying to get into MDA now, I trust our Oncologist, but not so sure about the Oncologist.

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